The Whole Story

All of Analiese’s story is already written. It is here, on my blog, for the whole world to see. I’ve been open and honest about every moment of my heart break. But it is not my entire story. There is more that I haven’t shared, because I’m fearful of the reactions. I understand that this is the Internet, and that people are free to say and think what they want. But please, be mindful of my family and others in similar situations. No part of this is easy.

When we received the diagnosis of Trisomy 10q, the genetic counselor recommended that my husband and I undergo testing to see if we are carriers of her condition. It was a simple blood test, and we agreed. 2 weeks later the results were in. My husbands results were perfectly normal. I however, was not so lucky. I am the carrier of her condition.

You might be wondering how that is possible. Afterall, here I am alive and perfectly healthy. It is a little complicated to explain, so I’ll do my best. Basically, Analiese had too much genetic material. I have the right amount of genetic material but it is in the wrong places. That is called translocations. When a parent has translocated chromosomes like I do, that puts the babies at risk of too much or too little genetic material. I have 3 translocations, which means there are dozens and dozens of potential outcomes for our children, all of which are equally deadly and devastating.

This leaves us with two options. Option 1 is to continue to get pregnant naturally, and do the genetic testing. If the genetic test reveals that the baby has genetic problems like Analiese then we will be in the same nightmare cycle that we just lived through. I can’t continue to feel and watch my babies grow, only to hold them while they die.

Option 2 is IVF and pre-implantation genetic screening (otherwise known as PGS). PGS allows us to create an embryo and test it for these chromosomal disorders before it is implanted inside me. We don’t know how long it will take to get a viable embryo, and it is expensive. Very expensive. And of course, our insurance doesn’t cover any of it.

So this is the rest of our reality. We’re mourning the loss of our precious baby girl, and we don’t honestly know if we will ever be able to bring a baby home. It all depends on when we’re able to save enough money (well over $30,000) and how many embryos it takes to get a viable baby.

We don’t consider this lightly. It is heartbreaking either way. But at least with IVF, I have a chance to bring a baby home. The agony I feel over this cannot be explained or truly understood. My daughter is dead because of my genetics. It is my fault, even though I would do anything to change it. Even though I never asked for this, the blame lies with me. I miss her more than I could ever put into words.